Overall, Dr. Santos says, it’s crucial to find a time when you can focus on your child to have this conversation—meaning, not when you could be distracted by a work call or when their soccer practice starts in five minutes—and to try to plan the conversation for a time when you think you’ll have the energy for it.
Tell them the truth about what MS is and isn’t.
“Honesty is the best policy,” Dr. Banwell says, which means getting your child’s biggest fear out of the way upfront: Tell them very clearly that you’re not dying. After that, be honest about what this diagnosis means for you and how your health and daily functioning may change. “You can say that you might have trouble with balance and issues walking in the future,” Dr. Banwell says. Or you can take a page from Benjamin and say that you might get messy while trying to eat spaghetti to try to make the experience relatable.
For teenagers and older kids, “really sit down and talk to them about what MS is and isn’t,” Dr. Banwell suggests. That includes having an honest conversation about what a relapse is—a flare-up of symptoms—and what you’ve decided to do about treatment.
If your child asks you a question, Dr. Banwell recommends that you’re open with your answer, even if it’s “I don’t know.” That may include some sensitive topics, like saying there’s a chance you may need a wheelchair in the future, if they ask. “You can say, ‘I’ll tell you what I’ve been told and what I know. We’ll learn together,’” Dr. Banwell says.
Don’t feel like you need to tell them everything.
Many adults prefer to learn as much as they can about a disease when they or a family member are faced with it, Dr. Banwell says. In her experience, children and teenagers often do not, she says, noting that many of her teenage patients say that they don’t necessarily want to know everything about their illness.
“It’s important to say that this is a serious diagnosis and talk about what a relapse might be—relapses are what children will see in the coming years,” Dr. Banwell says. “But with respect to future neurodegenerative potential, it’s not necessarily the first thing you need to talk about.”
And, again, don’t feel like you need to have all the answers. “It’s okay to say you don’t know the answer to something,” Dr. Santos says. “It’s better to say ‘I don’t know’ than to answer wrong.”
Address what this might mean for them.
It’s normal to wonder if you’ll develop a health condition that a family member has. Though the risk of developing MS is higher for siblings or children of a person with the condition than it is for the general population, it’s still fairly low. “If a parent has MS, the lifetime risk of their child developing MS is less than 5%,” Dr. Banwell says. “Meaning, there is over a 95% chance they won’t be affected.” She says that sometimes it’s helpful to phrase it in this more positive way instead: “I have this condition, but there is a 95% chance you’ll live without it.”
Share your feelings about your diagnosis (if you want to).
You’re probably feeling overwhelmed with the news of your diagnosis, and it’s okay to share that with your child—especially if they’re older or mature enough to process what that means. “You can say, ‘I’m scared, I’m upset,’” Dr. Banwell says. What you don’t necessarily need to do is say, “Here’s everything that can happen to me,” she says. That can be overwhelming. “Not all kids have the emotional bandwidth to handle that,” Dr. Banwell points out.